… and now, the rest of the story …

[Warning: this post is pretty long, and although I never intended for it to be that way, I didn’t want to split it into two posts, because I’m probably only ever going to write about this once.]

A couple weeks ago, I posted some of my anxiety-ridden thoughts about having my private life put on display. The irony doesn’t escape me here: I can publicly post about not wanting people to know personal things about me. Yeah, whatever. I’m an enigma.

At the risk of sounding Paul Harvey-esque, I felt like that particular blog needed a little bit of followup, since the event is now over and people have been asking questions. I never meant to be mysterious; I was just nervous about the whole deal.

I have four children. No big deal, right? But this is something many people who “know” me didn’t know until last Sunday. They know my three teens/young adults, and that’s that. But almost eleven years ago, my husband and I experienced the loss of our not-quite-five-year-old son after a life of constant struggle. When polite conversation would prompt, “Do you have any children? How many?” I would feel disloyal answering, “Three,” or “Three still at home,” and being vague about it, but in most cases, I simply didn’t want to explain that we used to have four…and deal with the pitying looks and comments from the newly-informed acquaintance. People generally don’t know what to say when you drop that bombshell on them, and I don’t blame them. I don’t want to drop it.

When we go through traumatic events in our lives, those who walk through them with us already know the whole story, so it’s comfortable to discuss, refer to, or ignore if needed. Those who haven’t been there, well . . . it’s just easier not to introduce that whole chapter in our lives, and if it comes up at some point, it comes up. How many abuse victims introduce themselves as such, each time they meet someone new? Not many, I’m willing to bet. The same goes for the loss of a child. We try not to kill a lighthearted, innocent question of “How many kids?” and turn it into a downer for the other person. As callous as this might sound, what was a huge event in my own life is not relevant to most of my interactions with others.

This past summer, my husband and I were asked if we’d consider sharing our story about how we’d dealt with the loss of a child. Our pastor’s daughter, Lauren, was compiling a set of video testimonies from congregation members who had gone through difficult circumstances, for use during particular sermon series to encourage those who feel alone in their situations. After discussing the idea, hubs and I decided to forego our personal comfort and look at the big picture. We met with Lauren on a weekday afternoon and simply talked with her for two hours while she videoed. The end result can be seen here, edited to less than five minutes’ time.

“Our” video was shown to introduce a sermon titled “When the Bough Breaks,” which dealt with loss of babies and young children. I had to sit down and watch while a thousand people listened to the most raw moments of our married lives recounted by my husband and me. I won’t lie and tell you it was comfortable. At the same time, I felt a profound relief at not having to skirt around that special part of my life anymore.

And it was special. Let’s face it: some of the most life-changing times are those we’d never choose to go through, and would never want to relive—and yet, if given the do-over option, would never choose to skip. Some of the most wonderful things happen as a result of awful circumstances, and that’s just the truth of it.

Our third son, Tiggy (known as Matthew only to the grandmas and no one else), was born with Trisomy 13. Evidently, having more than two of any of your chromosomes is not a good thing, and having three 13th chromosomes has some especially big words and bad statistics attached to it. Severe to profound retardation. Mid-line issues. Organs in the wrong locations. Polydactyly. Low muscle tone. Hernia. Seizures. Apnea. Feeding problems. Deafness. Heart failure. Vision problems. Cleft palate. Those fortunate enough to be born alive face an 18% survival rate for the first year.

We had no warning prior to his birth that anything was amiss; in fact, it was my best pregnancy of all, with no morning-noon-and-night sickness for the first four months, no dehydration and stuck to an IV pole for two weeks, no aversion to meat, no cravings, no exhaustion. A sonogram in my final weeks showed the baby was “measuring small,” something that didn’t alarm the doctor or me. His arrival was unique in that he was the only one of our children to begin the labor pains on his own, a full week prior to the scheduled c-section. (After twenty-one hours of non-productive labor with our oldest which concluded with a cesarean, it had been determined by my OB that all children after that would be delivered via c-section.)

Once he was born, though, the immediate alteration to our lives began. I was not able to see him for the first twenty-four hours; I couldn’t get off my back due to having spinal anesthesia for the c-section, and he couldn’t be brought to me because he was in the NICU with a variety of wires and tubes attached to him. I cried when the maternity nurses brought me a little Polaroid so I could see what he looked like. The days blurred but for me, reality didn’t hit until I realized he was not coming home with us when I was released from the hospital.

Our lives became a whirlwind of surgeries, specialists, two-hour trips to the children’s hospital in Pittsburgh, medical procedures and techniques we had to learn to use on a daily basis, and the sudden loss of privacy in our home. Sixteen hours each day included the addition of a private duty nurse to our small family. Nighttime was filled with the sounds of machinery and busyness as the night nurses tried their best to pretend they were invisible. Daytime always had someone present to witness the moments of frustration or embarrassment that would normally only be seen by immediate family members. Therapists came and went, becoming as much a part of our family as anyone who was blood-related. Our two older children had as much fun with them as Tiggy did.

On Christmas Day of Tig’s first year, seizures were added to his list of physical problems. One typical seizure branched into a handful of types, ranging from grand mal/full body all the way down to myoclonic, which prompted him to jerk spasmodically when a light was turned on or when his picture was taken. Medications were tried and discarded, and we learned how to deal with the seizures as they occurred, but they were never able to be fully prevented.

We attempted to live our lives as typically as possible, and to some extent were able to do so. Going anywhere with the entire family was an orchestration of equipment and timing, and our nurses were simply dragged along if the outing was during their shifts. Our house more often than not smelled like the puke of whatever food we were trying to get Tiggy to hold down, and to this day, I can’t smell vanilla-flavored nutrition drinks without shuddering. (When, after trying numerous—and expensive!—brands of specialized formulas, we finally stumbled upon the simple combo of green beans and milk in a blender, one of his doctors said, “Well, it’s nothing I would have recommended, but if it’s staying down and he’s not losing weight, do it.”)

We tried to provide as much normalcy as we could—to the point where, when we told the boys I was going to have another baby, one of them asked if we’d have more nurses coming to the house. Being too young to know any better, I guess they thought all new babies came home with extra people to help out. We taught the boys how to help when we changed a trach, or a feeding tube, and they got a kick out of taking turns shooting meds into Tig’s stomach port.

During his final year, seizures began to rob him of all the skills he’d worked so hard to achieve, one by one. Standing was the first to go, because he couldn’t keep his balance (always precarious at best) anymore. Sitting went next, and then crawling was no longer possible. Finally the day came when he could no longer even roll over. But the hardest part for us was not seeing him smile anymore. My husband, especially, had always been able to make him laugh by roughhousing during their times together in the evenings, and to get no response was heartbreaking. We were dealing with multiple seizures per day (literally dozens), and they were turning ugly—uglier than what the average person pictures when they hear the word “seizure.” Seize. Stop breathing. Period. We’d get the oxygen and one of us would administer an anti-seizure emergency drug while the other would bag him until he’d start breathing on his own again. We figured as long as his heart was still beating, we had to keep going until something changed. One horrible Sunday stands out in my mind: he stopped breathing for over eighteen minutes while we continued to bag him and wait for the ambulance to arrive. Once the guys got to our house, they continued what we’d been doing, only in the ambulance . . . in our driveway. They really didn’t know how to proceed; he hadn’t been breathing on his own for such a long time, but yet his heart was going strong. When the seizure finally ended and he started breathing again, they brought him back into the house and left.

Though we didn’t go into this type of detail in our video (or it didn’t make the final cut), there were still people who questioned what in the world I was thinking at the end of the video when I said, “It was good.” How could that whole experience be good? Some were puzzled, and some were almost angry that I would say such a thing, as if I were carelessly tossing the word about.

Well, I’ll tell you what was good. Through all the garbage, whether it was dealing with medical complications or people telling us our “lack of faith” was hurting our son’s chances for healing, we drew together. I’ll be brutally honest: there were times, early on, when I was almost swayed into believing those people, doubting my own faith, blaming myself, and questioning God. I’d had two pregnancy losses prior to the birth of our oldest son, and ended up with another miscarriage after Tig but prior to our youngest . . . was something wrong with me that I caused this? Long afterward, my husband told me he had been at his wits’ end during those “tossed by the wind” months of mine, wanting to shake me into sense and wondering if it would actually destroy our marriage if I didn’t stop being such an idiot (my word, not his). This might not strike anyone as odd if they didn’t know Tim and/or our relationship, but allow me to enlighten you: we’re the sickening couple who is always holding hands or sneaking a kiss; we have silly nicknames for each other and a plethora of inside jokes; we’ve never called each other names in the middle of a disagreement; he’s kind to me 365 days a year, not just on my birthday or Valentine’s Day. To think I might have lost him, permanently or temporarily, physically or emotionally, makes my stomach clench in physical pain, even now.

So where’s the good? We leaned on God when we had no ability to support each other. We found joy in the things others would find mundane . . . are most parents consciously thankful for the sounds their children make? We never heard our son’s voice until he was almost two years old, and able to have a cap-type device over his trach for short periods of time.  We thought it was great when our youngest started to crawl and taught her older brother how to crawl up a step or two. At three years old, our son was finally able to sit at a baby’s activity table and spin things, push buttons and move beads.

Our nurses, though frustrating at times, became like family members as they went through birthdays, holidays, pregnancy, pneumonia, and family visits with us. Most of them are still our friends today, all the more precious because of what we’ve walked through.

The best of the good came in the form of spiritual growth. As a Christian, I’ve gone through ups and downs of learning and failing, growth and stagnation. Having Tig was akin to getting a spiritual kick in the pants. I relied on God more than I ever thought possible. Much like someone who has always had “enough,” whether it’s money, love, security, or food, we didn’t appreciate the highs until we walked through the lowest valley in our lives. Things are seen in a different way when you come out of that valley, and you learn not to take anything for granted—even those things you swore were firmly built on rock.

When I think and say, “It was good,” I’m reminded of one specific day.

We were getting ready to bring Tig home from the hospital after yet another pneumonia complication, and I was changing his crib sheets. I was so discouraged, and as I went through the task, I was asking God what was going on . . . why did our son keep ending up in the hospital every couple of weeks, what was causing the repeated pneumonias, what was happening with all the seizure activity, etc., and I was pretty much pouring my heart out, asking for strength to get through the next round of whatever was coming.

I reached across the crib, and looked up at a framed print on the wall as I did so. It wasn’t anything fancy, just a simple watercolor apple tree with a Bible verse on it. I’d gotten it as part of a baby shower gift when I was pregnant with our oldest, and it had always been in the room of whichever child was the baby at the time. Over the years, I’d not really paid much attention to it; it was pretty, and the Bible verse was nice, but I’d pretty much stopped really “seeing” it. Yet I saw it that day.

I looked at the verse. “And whoever welcomes one such child in my name welcomes me.” Matthew 18:5.

It suddenly hit me: Matthew 18:5 . . . Tiggy—Matthew—born on the 18th . . . of May, the fifth month. 18/5.

God knew—more than six years before Tig was even born—that I would need to lean on that verse heavily someday. Right then, it was as if God spoke almost audibly to me about His love, not only for the hubs and me, but for Tiggy. He loved him more than Tim and I could ever possibly love him, and that was a whole heck of a lot. He used that simple nursery accessory to ease my heart during a really awful time.

I won’t tell you I never struggled after that point, because frankly, the day-to-day details beat us down more often than not. But I have never forgotten that day, and how much it meant to me—still means to me—that God made sure the pieces were all in place for the exact day I needed Him most.

Yep. It sucked to go through. But it was good.